This is what the doctor told Rizal Al-Amin Aminuddin while informing him that his wife had multiple sclerosis (MS). Rizal had never heard of the condition until that day in 2012.
Rizal, 46, began gathering whatever information he could about MS, a condition that affects the nerve cells in a person’s brain, spinal cord and eyes.
He was determined to be the best caregiver to his wife of 21 years, Norzey Md Nata. “Anyone would do this for their spouse, wouldn’t they?” he said.
MS causes the coating that protects a person’s nerves, called myelin, to be damaged by the body’s immune system. This disrupts or slows the signals travelling along the nerve fibres, leaving lesions and scars.
“Common symptoms include blurred vision, fatigue, dizziness, cognitive dysfunction and muscle spasms,” consultant neurologist Dr Chey Shin Yee said during the media launch of Ocrevus, a new treatment option for MS patients by Roche Malaysia.
She added that MS usually affected those between 20 and 40 years old, and has a 3:1 ratio of female to male patients.
It was at this media launch recently that Rizal shared his story, hoping to raise much-needed awareness among members of the public about MS.
Norzey’s first symptom was optic neuritis, where swelling leads to damage of the optic nerve. In Norzey’s case, it was in her left eye.
With a course of steroids, she recovered within a month. But then her right eye was affected, and she also began to experience double vision and, later, paralysis of her lower limb.
For Norzey, the MS diagnosis was tough to accept – more so since she was pregnant with her youngest daughter.
“One of the toughest times was when Norzey fell asleep for more than a month after giving birth to our daughter six months prior,” Rizal revealed, explaining that this was not a coma: she could still wake up if someone spoke to her, but would drift off to sleep soon after.
And when she did wake up from this deep sleep, she was bedridden for 1.5 years. Later, she underwent rehabilitation.
Now, the 46-year-old is able to walk by herself for short distances and is able to perform simple chores.
No regrets
Rizal still cannot explain how he pulled off splitting his time among work, their children, and caring for his wife, especially in the beginning.
When Norzey was hospitalised, his daily routine involved dropping off the kids at school or daycare, spending the day at the hospital with her, then picking everyone up before heading home.
“I had quit my job as a design manager a few years before and started my own company. So, my time was more flexible.”
Throughout Norzey’s treatment and rehabilitation, Rizal attended to the household chores on his own. He didn’t have the support of others in his family as no one knew much about MS.
The couple experimented with alternative treatments but nothing worked. So he finally came to terms with Norzey’s condition and continued with medical treatment that provided better outcomes for her.
“It was very challenging in the beginning and kind of a roller-coaster ride, but it’s a lot better now,” he added, smiling.
One of the most difficult decisions Rizal has had to make was letting go of his company so he could fully focus on caring for Norzey. But he has no regrets.
He now works as an architectural designer, and became president of the Multiple Sclerosis Society of Malaysia (MSSM) in 2022.
The society’s main aim is to provide a support network for those with MS, other than increasing the public’s awareness about the disease.
“We also seek the government’s assistance to make MS medicine more readily available to patients as it’s costly and not everyone can afford it,” Rizal concluded.
Head to the MSSM website for more information on multiple sclerosis.